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Senior Member

I was editor and publisher of local newspaper. I got sick and had to do much of my work from home, from the bed. I got some better, but this past summer I was out for a day (four hours) and then home the next, out for four hours, home the next.

When I realized so many people were not diagnosed who have CFS and the doctor's ignorance, I decided to speak out publicly on it. I didn't do it in the newspaper, I did it on a blog / discussion board that I ran for the newspaper. And some people I had regular contact with, government sources and advertisers knew.

Then I closed the paper. I applied for a job that was only 30 hours a week. I thought I could handle it. I didn't get the job. And all who interviewed me knew I had CFS. I don't know if that was a factor in my not getting the job.

Then XMRV is announced. I continued to post on the new local community forum about the announcement. I volunteer four hours a week at the library, and they know I have CFS. I told them of the announcement.

My employer now, another newspaper (I only work for them five hours a week) knows.

All of this I thought might help people who are having problems become aware and possibly get a right diagnosis and a better treatment. I was trying to make people more aware, more informed, maybe they have a friend and hearing me say what it is like, they realize their friend may have it. I was in a position to bring awareness to the local community.

I went to my in-laws the weekend before Thanksgiving. We told them about XMRV, while sitting around the dinner table. My husband told them he thinks he may have it also. My husband's niece asked, "Is it contagious." (Her face was less than ten inches from mine.) I explained to her that the type of virus it is means it is likely transmitted similar to HIV, sex, mother to child in nursing, etc. But I told her the outbreaks and cluster of cases provides some evidence that it may be more easily transmissible than that. My husband's other niece, said, "Yeah, but you don't know if those people in those clusters were sharing utensils, or what." I said true.

Now, I now think it very insensitive for me to be hugging on my relatives, breathing in their face and then say, "I likely have a virus that gave me a chronic disabling disease.... Pass the mashed potatoes please."

I am reading Osler's Web. I took it to the library to have it renewed. I got into a conversation with the librarian about what it is about. And then it hit me, I might want to get a part time job at the library if one becomes open next year and I make some improvement. I don't need to be talking about having some virus that they don't know how it is transmitted. Working in a library means working with the public. They won't hire me if they think I will infect everyone who walks in the door.

In a practical view though, I feel anyone I have regular contact with would already have XMRV if they were going to get it from me. But that reality may not change perception and fear.

If this virus was like HIV, I would have no problem being open about it. But I suspect that it is more easily transmitted than that. Not everyone who gets the virus gets sick. But I think it is being passed on more easily than through blood, sex and mother to child. In Osler's Web, there is much evidence of this. The immune system abnormalities were seen in other family members, even though they did not get CFS.

So, at some point, this will become well-known. And there I have been telling everyone I have CFS. If this scenario works out the way I see, then my telling everyone I know that I have CFS will work against me, even if I get better, more better that is. I might would not be able to get any job that has contact with the public.

So I am going into the closet. I will not be talking to non-CFSers (except my hubby and parents and sisters). No more advocacy from me.

Senior Member

I, too, dropped out of advocacy and trying to educate an unwilling public, medical industry, family, friends. For about 10 years I kept my mouth shut and just tried to wait patiently.

This news of XMRV brought me out of the closet and I revealed myself to everybody I knew, in trying to spread the word and interest. The response has been mixed, just as I expected. The majority are unmoved. Family and friends should have known, just by knowing me, that the "crazy or/and lazy" model didn't fit, but most people are used to going along with the crowd. It really separated the goats from the sheep, in my life, and for that, I guess I can be grateful.

Even if XMRV turns out to be another false hope, I still have hope that the interest it has generated will lead to other discoveries.

Because of WPI and the discovery of XMRV, I discovered this list. And from this list I discovered the LDN list, which I researched here and elsewhere and decided to try, since it doesn't have bad side affects, like liver and kidney damage, and has a lot of good science backing it up, mostly for MS, but other conditions, too, like autism.

Good luck to you. I know how isolating this illness has been and continues to be.

Katie

Guest

I too am in the closet so to speak. Since I moved across the country I've been very careful who I tell, I have to trust them first and so far my judgement hasn't been too bad. I wish I could let people know, make them understand but there is a fundamental barrier between 'us' and 'them'. I know sympathetic mothers and fathers who have fought for their sick children, have carried them in physically to see doctors and fought social services who wanted to take them away, they are wonderful parents. But they don't understand what it is like. They still think that stamina can be built up, that when they say they are tired that it feels the same as their version of tired. It's like describing the colour blue with words alone, no one can really know how it feels and understand all the facets in each person.

I have a negative viewpoint but I feel it is accurate. I have people in my life who know that I am not manifesting this illness myself, I have family who don't blame me when I have to disappear off early at events to rest, but there's a question mark in their eyes. Strangers, friends, partners and family can get so far and have such good intentions, but understanding can only go so far. It's up you how much effort you want to but into it.

Well, that was depressing One the brighter side, I have some great people in my life who 'get it' the best they can.

Senior Member

I think Levi makes a very good point. People with other illnesses do not feel compelled to share the name and nature of their illness and no-one has a right to question them/us. Illness is a very private matter.

If one is in a situation where sharing the cause of one's degree of disability is necessary, when dealing with a potential employer for instance, one can always say one has a neuro-immune illness which affects a, b, c.

If questioned further, and reluctant to say that one doesn't wish to discuss, one can, as Levi suggests, simply say the cause has not been found, "They don't know why I have this." All quite true and all very simple.

That should do it for all except doctors and insurers.

As to what to reveal re contagion, that's a whole other kettle of fish but not one that is relevant, I don't think, unless one is intimate.

I know that, in the past, I brought a level of personal angst to these encounters which complicated them unnecessarily. I suppose I felt that I had to, somehow, convince everyone I told of the validity of my illness. No more.

Guest

Amazingly...I just went to my ENT, a nice young woman who I've been seeing for the last year. I have ear problems/balance issues sometimes after barotrauma to my ear in a hyperbaric session four or five years ago by an apparently careless nurse.

Anyway. I figured it was time to 'fess up. I had cancelled the appt three times, cringing at the idea of telling her I have chronic lyme AND use a hyperbaric chamber. I figured she'd think I was totally nuts.

Instead she understood. She has seen the fantastic documentary, Under our Skin!!!! She didn't question my diagnosis or my hyperbaric at all. She tested the pressure of my eust. tubes, stuck an uncomfortable spaghetti thin camera up my nose, etc. My tube is functioning and my middle ear looks okay so it looks like allergies and scarring of the tube from the barotrauma is the issue. So the news is better than I expected.

I was so relieved she took me seriously, yet did not pity me.

In contrast, frankly, nobody gives a crap I have lyme usually. They tend to think I'm wingeing if anything. As I've said in other posts, I've been criticized for bringing it on myself or "whining about my fate". They just see me as they see themselves. It has not affected other people's treatment of me at all, except that they ignore it, which is infuriating, and they eventually ignore me if I don't run around doing lots of exciting things with them like I used to.

Moderation Resource Albuquerque

Yeah, I find that most people really don't care and don't really want to know what is the matter with me. I've been simply saying that I have autonomic dysfunction and it isn't clear why. That mystifies them enough not to ask more.

I have told close friends about XMRV, but I don't think I am going to extend the circle of my "transparency" much further, other than doctors. Many people still freak about "catching" HIV from casual contact and, having lived in India where there is a lot of active leprosy, I don't want to invite that kind of concern!

Senior Member

Over the many years I've been ill, only one friend expressed concern -- he and his wife had just had a baby and were worried. I completely respected their fears that I might transmit something to their newborn, even though this was distressing for me. I still think they're among the more intelligent people I know.

Perhaps it's going to change, but for the most part the reactions I've gotten over the years run the gamut from bored apathy to complete disinterest.

happy to be here

In my personal life it's a judgment call, though I tell fewer and fewer people as the years pass - and unless they're a close friend, I limit it to, "I have health problems...it's a long story." But I'm always, always "closeted" in my work (as a photographer - very part-time, of course). That kind of human frailty just does not go over well in professional situations. I'm contemplating "coming out" with XMRV, because I'd like to do a photography project on the subject, but I'm not sure if it's worth it.

George

Guest

The three things that people ignore because it triggers inside of them "Fear" of the unknown, fear of the ultimate reality.

Trying to explain to the healthy what it's like to be ill, any kind of ill, is like trying to explain to someone who has never been shot; what it's like to be shot at point blank range with a 9 mil. They don't get it, they can't get it.

Finding a compassionate person who is capable of listening and trying to understand is a rare and precious gift.

I didn't get it when I was healthy and running hell bent for the brass ring so I find it's easy to just let the ignorant go on in their state of bliss. I can't be angry, or confused by their reaction since I've been their myself.

And that's the wonderful thing about forums like this. Here are the people who understand. This is home.

I've been having really good results lately with telling people that I have "an immune system problem" or "a messed up immune system". (only in situations where I have to explain why I'm disabled, of course) People seem to grasp it right away and are appropriately sympathetic. And they haven't seemed overly worried.

Senior Member

Well, my point was that for me, things have changed now that it seems this thing is caused by a virus, and what I conclude as to likelyhood of how contagious it is. Plus, there is the trouble of my trying to let people know how debilitating it can be, then six months later trying to get the same person to hire me.

Senior Member

I didn't mean to minimize your concerns. After ten years of marriage my wife is now struggling to not worry when we kiss. There are so many sides to this with which we are all just starting to grapple.

If four percent of the population is positive for XMRV but asymptomatic, there aren't many people who haven't already been exposed. Over the years my wife has been the picture of health. I've always been the one that gets sick when she so much as sneezes.

My personal opinion is that it takes something more for this to take hold (or to become symptomatic) and we're trying to focus on keeping her from getting run down.

Senior Member

I was just pointing out the difference between not wanting to explain because it takes too long, and my new understanding of the damage that can be done to our future and our relationships now that it may be a contagious virus.

For me at least, the XMRV news changed things. Although, being public (in the public position I have locally) was also not good. It was ok, when I was working for myself. But now I depend on other people hiring me, if I can do the work. So that has changed things for me also.

Senior Member

The three things that people ignore because it triggers inside of them "Fear" of the unknown, fear of the ultimate reality.

Trying to explain to the healthy what it's like to be ill, any kind of ill, is like trying to explain to someone who has never been shot; what it's like to be shot at point blank range with a 9 mil. They don't get it, they can't get it.

Finding a compassionate person who is capable of listening and trying to understand is a rare and precious gift.

I didn't get it when I was healthy and running hell bent for the brass ring so I find it's easy to just let the ignorant go on in their state of bliss. I can't be angry, or confused by their reaction since I've been their myself.

And that's the wonderful thing about forums like this. Here are the people who understand. This is home.

Senior Member

Tina and all, this is such a dilemma for us. I do want to thank you Tina and everyone else who has been candid about CFS and tried to educate others. I never told people about it until I became totally bedridden. I have to explain now. Why is there an unmade bed in my living room? Why am I always on it or in a darkened bedroom during the day?

I do think that if you can work it's probably best not to share. We also don't know yet if XMRV will be found in us, well, most of us don't and we don't know yet whether it causes CFS nor how it is transmitted.

I think that if I was at a Thanksgiving meal with other people this year I would have been talking about it too though. It's only the biggest news we've had for CFS ever!! We're only human. We want to be seen as legit as well, not as malingerers.

It was a lot easier for me to keep CFS under my hat when I was able to work because I wasn't online and very little about CFS was to be found anywhere except in the health food stores.

I totally understand you going into the closet. I've been grappling with the contagious questions that continue to pop up as well.